BOSTON – In 1989, when he was a 19-years-old college student, Eric Dishman was diagnosed with a rare kidney cancer and given just months to live.

Instead he spent the next 23 years visting 17 hospitals and clinics across eight states, receiving exhaustive and exhausting treatment – more than 60 rounds of chemotherapy, radiation and/or immunotherapy – than ended up costing more than $6 million.

Over the decades, he received 57 different diagnosis codes. Even in the early days, he remembers "two oncologists arguing in front of me about what I really had," said Dishman, keynoting the HIMSS Precision Medicine Summit in Boston on Monday.

By the time he was in his early 40s, the prognosis was not good. His kidneys were failing, and dialysis was not compatible with the chemotherapy he needed.

At that time, Dishman was a fellow at Intel; in what he described as a "Hail Mary" gambit, one of his colleagues suggested he avail himself of the company's technology and undergo a whole-genome sequencing.

The insights gleaned from the three terabytes of genomic data that resulted changed everything. Clinicians suddenly realized that his unique form of cancer has more in common with pancreatic disease than with renal cancer, said Dishman.

That enabled them to better target their treatment plan, and before long he was cancer free and eligible for a kidney transplant.

Dishman's doctor eventually told him that 90 percent of the treatment regimens he'd endured for more than than 20 years – millions of dollars worth of "imprecision medicine" – had been essentially worthless.

Scaling up and out

In 2016, President Barack Obama asked Dishman to head up the cohort program of the landmark Precision Medicine Initiative.

Now, as the director of what's become known as the All of Us Research Program at the National Institutes of Health, Dishman said he aims to make that patient cohort as large and representative of the U.S. population as possible.

He's also keenly aware, he said, of how lucky he was to receive the treatment he did – and how great it would be to democratize it. Even a a high-powered technology executive, with a smartphone filled with the names of senators and CEOs, "I barely got access to precision medicine," said Dishman. "So how do we scale that to everybody?"

Dishman has done advocacy for more than 1,100 cancer and kidney patients, and he's donated his whole-genome data to a survivor study to learn what other insights might be gleaned from it. But he wants more.

And that starts with casting as wide a net as possible for the million participants he hopes to sign up for the NIH All of Us program to speed precision medicine advances.

Most medical research participants are college-educated white men, said Dishman. "We don't have the depth of data to understand what causes illness and health."

By accounting for big individual differences in lifestyle, environment and genetics, NIH researchers will better be able to uncover new strategies for delivering precision medicine to more people he said.

Right now, healthcare is primarily delivered in an expensive "medical mainframe," said Dishman, using a computing analogy, with the focus on expensive and resource-intensive specialty hospitals, emergency rooms and ICUs.

The path forward has to be away from the "medical megaplex with the high priests of healthcare," and toward a more "personal, distributed" healthcare – and health research – that embraces telehealth, remote monitoring, wearables, home physician visits and more.

Rather than remaining only the province of large academic medical centers, Dishman sees a day in the not-too-distant future where genomic data could, for instance, be collected at the drugstore or even at the workplace.

But between now and then, there are four challenges – but also opportunities – to arriving at that model for personal, distributed research:

Distributing quality data collection capacity to more people, including participants

Enabling and engaging people from all walks of life to participate in biomedical research, so they, too, benefit from the science and discoveries

Personalizing datasets to include real-world, in situ and real-time data from a growing array of consumerized medical devices and medicalized consumer devices

Democratizing biomedical research through open but safe data, easier tools, and better training so we can have more brainpower per problem

Toward that end, the All of Us project has three big goals, said Dishman: first, to nurture relationships with one million U.S. trial participants, "from all walks of life," for decades to come. Second, to deliver the "largest, richest biomedical dataset" yet compiled, and making it easy, safe and free to access. Third, to to catalyze a robust ecosystem of diverse researchers and funders, hungry to use and support it.

It won't be easy, but by distributing data collection and diversifying to that large and broadly diverse group, engaging them on a longitudinal basis (perhaps as long as 60 years), NIH will help democratize its research to a wider continuum of expertise, said Dishman – approaching a "universal cohort" and something akin to a "learning healthcare system."